Disability. A Parallel History
01 — Parallel worlds.
In this episode I’ll be using outdated terminology that most of us would consider offensive today and I’ll be describing some disturbing theories and practices… so be forewarned.
Hi Im John Roche.
I’m going to give you a rough history of disability.
It should be called the history of accessibility or the history of inclusion but these concepts, are relatively new.
The story of disability runs in parallel with the story of civilisation itself.
And like the story of civilization, some of it isn’t pretty.
It involves murder,
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neglect,
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segregation
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and sterilization.
But it’s also a story of innovation,
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determination
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and ultimately love.
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Attitudes to disability today are very much products of its history.
(trump)
If we want to understand current practices, sterotypes and infrastructure around disability we have to revisit it’s past.
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It’s also very much a personal history to me.
I’ve got Cerebral Palsy.
So, in telling this story I might drop in a couple of my own first hand experiences too…
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Welcome to this Yarn miniseries:
Disability A parallel history.
Episode 1: Parallel worlds
You’ve heard of the Par-Olympics right?
Today, it’s the second biggest sporting event in the world.
The Paralmpics was established in Stoke Mandeville hospital, England in 1948 by a small group of veterans, who sustained life changing injuries during the second world war.
The veterans competed against each other in sporting events in the modest surroundings of the hospital gardens.
They organized their event to run in parallel with the Summer Olympic Games being held in London 45 miles away.
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At the time, the world was focused on the Olympics, very few people even knew that this parallel event was going on.
It reminds me of my childhood.
I attended two parallel playschools.
One was near my home, in my local village with the local kids.
I can’t recollect my first day in that playschool or anything much beyond drinking diluted orange from colorful plastic cups and eating gingernut biscuits.
But my first day at the other playschool is still quite clear in my mind.
This playschool was in the town. in a much bigger building, with long wide hallways.
I remember being brought into a large room with the highest ceiling I’d ever seen.
It was very noisy — the sound of all the other children echoed around the vast space.
The floor was covered in Limonium tiles, the pattern depicted an intricate plan view of a road network, complete with roundabouts, car parks and intersections.
And the smell, a mixture of playdoh, poster paints, disinfectant, and the district aroma of cooking potatoes wafting in from the kitchen in the adjoining room.
I clung to my mother, surveying the room while she chatted to the other grownups.
Then I started to notice something unusual about the children. They weren’t like the kids in my other playschool. The children here looked very different.
Some were using walking or standing aids. Some wore padded helmets. One or two of them moved erratically, they shook their heads or shouted sporadically.
Others were slumped in chairs, their faces and hands contorted.
This was the first time I’d seen anyone like this before. I was afraid.
Then my mother gestured that she was leaving.
I remember thinking — there’s no way you’re leaving me here!
As she walked out the door — I erupted in tears.
Why am I here? I thought. These kids aren’t like me.
As the weeks and months past I got used to attending both playschools and I got used to the kids I originally thought were scary.
But as I grew older the two worlds continued in parallel.
I went to primary school in the able-bodied world (for want of a better term)
While at the same time, I went to physiotherapy and occupational therapy in the disabled world.
I went swimming with the pupils in my able-bodied or typical school once a week
And I also went swimming on a different day with the disabled children and their families at the same swimming pool.
I attended parallel Christmas parties. Parallel sports days. Parallel art classes.
I took parallel buses to parallel events with parallel people.
Nobody from the two worlds ever crossed over.
I never spoke about the disabled world to anyone in the able-bodied world.
I was able to switch between the two worlds. I knew some of the other kids from the disabled world went to able-bodied schools too but most of them didn’t.
As I grew into young adulthood, I saw less and less of the disabled world because I didn’t need the treatments as often. As a consequence, I left that community behind. And if I’m totally honest, at the time, I just wanted to forget about it.
So today, I don’t have any close friends with a disability and I rarely interact with people from the disabled community.
The popular view now of course, is that any kind of segregation isn’t good for society.
I grew up in the 90s, and while it wasn’t exactly ‘out of sight, out of mind’, when it came to society’s approach to disability, the remnants or segregation were there.
Before we move on, I’m going to tackle a question I’ve been asking myself for as long as I can remember…
What is a disability?
It’s a tough question…
People still don’t totally agree on the answer..
If you break it right down you could say a disability is..
Any impairment that makes it more difficult for a person to do certain activities or interact with the world around them.
These impairments, may be cognitive, intellectual, mental, physical or sensory.
That’s not a bad description, right? Covers pretty much everything?
Any impairment that makes it more difficult for a person to do certain activities or interact with the world around them.
A disability doesn’t have to be a permanent condition either. It can be temporary. So technically if you get drunk — your ability to do certain activities is impaired, so you could say you’re disabled.
Any impairment that makes it more difficult for a person to do certain activities or interact with the world around them.
The word Impairment — It gets interesting when you try to define what the ‘impairment’ is.
From a medical point of view, a disability is a problem with the person’s physiology, directly caused by disease or trauma or any other health conditions that require medical care.
The goal is to cure the individual insofar as possible or to adjust the individual’s behaviour or practices so they can interact with the world more easily.
So, a person who’s hearing is substantially impaired. You might call them deaf.
This is a disability because the person doesn’t have the ability to hear in the same way the majority of the population does.
This is usually called the medical model of disability.
But there’s also another way to define an impairment. The impairment is not attributed to the individual, but rather the conditions of the environment surrounding the individual.
It’s a barrier in their external would, which they need to overcome. And people are made to be disabled because the environment they live in wasn’t designed for them.
This is usually called the social model.
So, for a person with a hearing impairment, they are disabled because the world around them has been optimised for hearing people.
This is true for a lot of disabilities. I, personally only have the use of one hand. Any task that requires the use of two hands, at the same time, I’ll find difficult. For me there’s usually a simple way around any difficulty but if everyone else in society only had the use of one hand, when then I wouldn’t be at a disadvantage.
This is the main reason why I think the term Handicapped makes more sense than Disabled — in some cases at least — because external factors are handicapping the individual.
The term is derived from an old game, where two players trade objects and a third, neutral person judges the difference of value between the objects.
The concept of a neutral person evening up the odds was extended to handicap horse racing in the mid-18th century. In handicap racing, horses carry different weights to compensate for the weights of the jockeys riding them.
The use of the term to describe a person with a disability means a person carries a heavier burden than others or in other words is hindered by something.
In 1973 Ed Roberts, a prominent disability rights activist used the term with searing effect in a speech demanding better laws for people with disabilities…
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This is only my own personal take of the word handicap, others disagree.
In a lot of situations, a person with a disability is perfectly healthy, they just have difficulty because they are in the minority, they are outliers or they deviate from the ‘norm’, so society disregards their needs.
Any impairment that makes it more difficult for a person to do certain activities or interact with the world around them.
But what if the impairment is so severe that it impacts the person’s ability to live?
If there’s no medical cure or tech-no-logical support, a person that can’t perform life sustaining activities like feeding themselves will need sustained care.
How societies choose to care for their more disadvantaged members has been evolving over the centuries. Sometimes progressing and sometimes regressing.
How different societies view disabled people has a direct impact on how they are treated.
If they’re not seen as worth the effort, well…
Or if they can’t see them at all — then we’ve got the out of sight out of mind problem.
Let’s begin our look back through history and see how we got to where we are now.
Oh wait before we dive into the past, in order to tell this story in context, you’ll hear a lot of old terms that you might find jarring or offensive by today’s standards
- well I hope you do anyway.
To get it out of the way — here are all the terms I’ll be referencing, that were previously used to describe someone with a disability. A lot of these words were official scientific or medical terms until recently…
A person with a physical disability was sometimes called:
A Cripple, Crippled, A Cretin, Cretinuous, A Spastic, An Invalid, Lame, A Gimp or Deformed.
A person with a mental or intellectual disability at one time or another could have been called:
A Fool, Feebleminded, An Idiot, An Imbecil, A Moron (that’s an immoral imbecile),
A lunatic, An Incurable, Possessed, Touched, A retard or Retarded.
A Person of smaller stature or someone with Dwarfism was sometimes called a Midget
Other general catch all terms for a person with a disability were:
A divient, Defective, Dumb, handicapped or a freak
We’ll discover most of the origins of these terms as our story progresses.
Our history starts at the start of humanity…
Before Homo Sapiens, there was the Neanderthals.
Over the years as archeologists identified and uncovered Neanderthal skeletons, they started to notice something they were not expecting. They found a significant number of fully grown, adult skeletons with signs of cerebral palsy. They also found adult skeltons with missing limbs, evidently that they had lost from childhood and they found more skeletons with other major physical impairment that would have severely restricted their mobility.
The age of skeletons at their death is proof that these people were supported and cared for by their families or tribe members throughout their lives.
These are the first known examples of inclusion.
(so it’s not a bad start)
Moving on about 35 thousand years to the Egyptians..
The Ebers Papyrus is an Egyptian medical book dating to around the year 1550 BC. It features the first recorded reference to mental and physical disability.
The papyrus is a really interesting document. It shows us that the Egyptians had quite advanced medical knowledge. It notes that
‘the heart is the center of the blood supply, with vessels attached for every member of the body.’
Mental disorders are detailed in a chapter of the papyrus called the Book of Hearts.
Disorders such as depression and dementia are covered. The descriptions of these disorders suggest that Egyptians conceived of mental and physical health in much the same way.
This is the voice of Howard Carter.
Describing what he saw when he discovered he tomb of the most famous Egytian of them all…
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The Pharaoh- Tutankhamun, was physically disabled.
His skeleton shows a deformity of his left foot and his spine shows evidence of scoliosis.
Several walking canes were found in his tomb near his body but there are no depictions of him with any kind of walking aid.
His disability was most likely kept a secret from anyone beyond his inner circle. This is a tactic that will be repeated by prominent figures throughout history, as if having a disability was something shameful.
Speaking of walking aids — The oldest known documented representation of a wheeled walking aid is from Egyptian times.
On display in The British museum is a small terracotta figurine. It depicts a young boy or girl standing upright with a wide smile on their face as they hold on to a walking-frame.
The frame is triangular at the base, with a wheel at each corner and it has a bar at the top that the child grips with each hand.
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Other ancient cultures took quite a different approach to disability.
The Ancient Greeks (and the Romans even more so), believed they exemplified the ideal human type. They viewed themselves as superior to all other races.
Physical difference, in the form of ethnicity or a disability, was seen as a mark of inferiority or weakness.
The Spartans, known for their extreme macho culture and their obsession with the warrior,
They passed a law that required the immediate killing of infants who were judged ‘deformed and sickly’.
The practice of killing ‘deformed’ infants is even mentioned in the Greek myth of Hephaestus. (Huh — fes — tus)
Hephaestus is the only God with a disability.
In the myth Hephaetus’ father Zeus and his mother Hera, the king and queen of the Gods, were initially delighted when their child was born…
Hera was delighted her latest divine delivery was a boy.
But the Queen’s delight quickly disappeared when she was handed the child she just brought into the world.
The infant boy had a rough and harshly lined face along with a drastically misshapen body. Upon further horrified inspection, Hera noticed that the boy’s feet were completely inverted, with his toes being positioned where his heels should have been and vice versa.
“This cannot be.” Hera muttered repeatedly to herself over and over as she slowly made her way to the top of Mount Olympus’ highest peak. The Queen of the Gods lifted her newborn child high over her head and hurled him over the edge with all her might.
For two full days the baby hurtled through the air until finally he hit the ocean’s waters with a massive splash. The baby continued to desend deep under the water until he hit the surface of the earth. The collision was so great, a massive depression formed that nearly reached the fiery centre of our planet’s core.
Thus, the first volcanoes had come into existence.
Hephasestus’ Roman name, Vulcan is referenced in the term given to the study of volcanoes — volcanology.
The reason I mention Myth is because the Greeks used them to understand the world around them and now we often use myth to understand ourselves.
The story of Hephastus speaks to the compempory attitutes to disability.
The Greeks were equally as intolerance when it came to intellectual disability.
It was the Greeks who gave us the word ‘Idiot’.
The word comes from the Greek word idios, referring to a person who was not a public official. But as the term evolved — It came to refer to one who lacked professional knowledge, and later to one who was ignorant, ill-informed or of ill-judgement.
(We’re not finished with the word Idiot yet — It will later be used as a scientific definition in the 18th century)
While we tend to attribute the Ancient Greeks and Romans as the forefathers of modern science and learning- the average Greek or Roman person was incredibly superstitious.
The notion that a god, is responsible for causing a disability was very prevalent.
Some believed that God created disabilities as a method of punishment, either for the individual or for the parents. Others viewed disability as special gift from God.
People who had seizures in the ancient world, or “fits” as they called them, were often said to be “touched by the finger of god” and considered sacred.
Hippocrates the “Father of Medicine,”
(Doctors still take his oath to ‘do no harm’ today) -
Hippocrates tried to dispel this myth about Epilepsy in particular.
Here’s Prof Frank Snowden of Yale university
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Strong words from Hippocrates there, calling out fake news, unfortunately he was way ahead of his time and contemporary thought.
Aristotle, perhaps the most famous Greek philosopher, believed, as did most in Ancient Greece, that a man was the most highly evolved being, and that woman were one giant evolutionary step below, representing
“the first step along the road to deformity.”
Aristotle also recommended that there should be a law- similar to the Spartans- “to prevent the rearing of deformed children.”
He wrote
“As to the exposure of children, let there be a law that no deformed child shall live.”
To ‘expose’ meant to leave an unwanted infant out in the woods — exposed to the elements.
Exposing young children with severe disabilities was a common practice in ancient Greece and early ancient Rome.
The myth of Romulus and Remus, the brothers who founded Rome, starts with their exposure as babies. They were left by a river to fend for themselves but luckily a Wolf found them and she brought them to safety.
In Ancient Roman society, people with disabilities were treated as objects of scorn or humor.
This is explained by Professor Bob Jackson, from Edith Cowan university…
“…in between events.”
It was also not unusual for wealthy Roman families to own a slave with a physical or a mental disability, referred to as a “fool,” for their amusement.
Fools in later times would become known as jesters…
“… for the entertainment of the court.”
There are few references to disabilities in the ancient world, and nowhere in writing did the Greeks or Romans ever ponder what could be done to make living with a disability more bearable or acceptable.
The Celts, on the other hand — had an alternative approach to the disabled.
Each individual tribe was responsible by law for caring for the wounded, sick and those with intellectual impairment. Communities cared for their own, in the community.
With the rise of Christianity, there was a gradual influence on how peoples with disabilities were treated.
In the stories of Jesus Christ, he showed compassion for people with disabilities.
In the New Testament, Jesus is frequently credited with showing kindness and performing miraculous cures of those who were “lame, blind, and otherwise disabled”.
The parable of the Samaritan and examples with lepers gave clear guidelines for how marginalised people were to be cared for and respected.
His message to “Do unto others as you would have them do unto you”,
is a call for empathy and understanding.
The Islamic religion has a similar ethos when it comes to the treatment of people with disabilities. The Koran states:
And give not unto those who are weak of understanding, the substance which God hath appointed you to preserve for them; but maintain them thereout, and clothe them and speak kindly unto them.
Buddhists also believe in showing compassion towards people less fortunate than themselves, including towards disabled people.
But for Buddhists, who believe in reincarnation, there’s an interpretation that bad karma is the cause of disability. Specifically that person’s moral inactions from a previous life will manifest as misfortune or hardship in their next life.
Buddhists also believe that if you help the less fortunate, you will build your own good karma.
In modern societies where Buddhism is the main religion practiced, Buddhists with disabilities have reported that other people have condescending attitudes towards them.
The emphasis on compassion has been linked with a reluctance to encourage independence and social inclusion for people with disabilities.
In Thailand, the World Bank reported that because of Buddhism’s teachings on showing compassion towards the weak, people often donate money to beggars with disabilities or charities that help the disabled. The World Bank argues that while this kindness can be admirable, it does not promote equality for people with disabilities.
The first time I had heard about bad karma and reincarnation when I was about 12 years old.
At that age I was soccer mad. The peak of my soccer obsession were the years of 1998 through to 2002, in particular the world Cup in 98 and the European championships in 2000. I remember intently following the lead up to the forthcoming euro 2000 tournament and all the qualifying games.
Then one day a story from the soccer world exploded on to the main news and everyone was talking about it.
The Hoddle Disability row.
The England soccer team manager at the time was Glen Hoddle. During an interview with the Times newspaper he made some unusual comments…
“…was to upset people with disabilities.”
Well that’s just what he did…
“…still no clearer what he did mean”
So Hoddle went on tv and did another interview to clarify what he actually meant…
“…Ive got three kids god bless them are not disabled.”
Ah, that didn’t really clear up anything.
It only enraged people further..
“… karma to arrive quickly.”
Glen Hoddle was sacked before that game against France, which England lost 2–0.
At the time I think I was more confused by the whole fiasco than anything else.
The teacher in my primary school spent a few minutes in class condemning the comments.
She was probably trying to head off any potential teasing I might receive, being the only disabled kid in my class.
Where were we? I think we were up to Christianity in Europe…
By the fourth century A.D., the rise of Christianity in Europe led to more humane practices toward persons with disabilities.
Exposure and Infanticide decreased and helping “the afflicted” became a sign of religious obligation.
The first institution to shelter abandoned infants and the sick was established in 325 AD at Nicea, an ancient city in modern Turkey..
Leprosy declined after the Crusades, so the remaining colonies, the leprosarium, were converted to other uses.
Here’s Professor Bob Jackson again…
“…no rights or control over what was going on.”
These places came to be known as the cities of the dammed.
The administrations of these so called “cities of the damned” had total authority over their inhabitants. Their rule was harsh. They used “stakes, irons, prisons and dungeons’ to keep people in line.
During this time, “idiot cages” became common in town centres.
The idea was to “keep people with disabilities out of trouble” or to stop them from wandering off but they also served as entertainment for townspeople.
A popular activity if you passed the town square was to “rattle the cage”, so the people inside would react. That was fourth century entertainment.
Some people with disabilities, particularly those considered unproductive dependents, were “shipped off” to other lands. Some communities’ paid sailors to take such individuals away so they would no longer pose a burden.
This practice led to the “Ships of Fools,” the boats that would sail from port to port collecting human cargo.
Ship’s captains even started charging admission so curious townspeople could board the ship while it was in port and view the ‘Fools’ on show.
Eventually, the ships would abandon their “passengers” at another port, forcing them to fend for themselves.
The practice of “shipping off” people with disabilities may have been rare but the popularity of the legend suggests that society wanted to separate itself from “deviant” people.
During the Middle Ages, the Roman Catholic Church provided refuge to those in need, establishing orphanages, hospitals, and homes for the blind and the aged.
In the year 787 the archbishop of Milan, founded an asylum for abandoned infants.
He wrote,
“As soon as the child is exposed at the door of the church,”
“it will be received in the hospital and confined to the care of those who will be paid to look after them.”
While those words sound well intentioned, the conditions at the institution were dire, most children admitted didn’t survive into adulthood.
Another, more community focused approach to caring for people with disabilities was documented in 1215 at Gheel in Belguim.
People with disabilities were brought there on a pilgrimage because it was believed that madness could be cured at the shrine of Dymphna, the patron saint of the mentally afflicted.
A tradition built up in the town where local community members took in up to 2 boarders with disabilities.
This is considered the beginning of family care and foster care.
Over 800 years later the pilgrimage to Gheel’s Shrine and the tradition of taking in boarders still continues.
Gheel Locals, Toni and Arthur, share their home with two boarders, both with mental disabilities — Their first boarder was Dis, who is 87…
“..can I come live with you?.”
And their second boarder is Luke who’s 48…
“…I cant imagine a life without them.”
In 1996, When I was 11 years old, I went on my own pilgrimage of sorts. I was sent to a similar town to Gheel, in that it built up around a religious shrine — The town of Lourdes in the south of France.
Lourdes was made famous among Catholics in 1858 when a local peasant girl claimed to have seen apparitions of the Virgin Mary at a the mouth of a cave.
The story was told in a 1943 movie
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Apparently people spoke English in American accents in Loudres back then…
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The girl was later canonized. A massive church was built on the site above the cave and the town became a major location of pilgrimage and what you might call religious tourism.
The stream from the cave was believed to have healing powers. Baths were constructed so pilgrims could bathe there and be cured of their ailments.
Of course, before I went, I didn’t know any of that.
My mother had signed me up for an annual kid’s with special needs, trip there for the Easter holidays.
I remember being hesitant at the idea –
“Wha? But Im not religious.” I said to my Mum.
“I don’t want to have to pray all day”.
“We don’t even go to mass. I wouldn’t know what to do.”
“Shhh… Don’t be saying that.
My mum said.
It’s a free holiday- to a foreign country.
Don’t you want to go on holiday?
You’ll get to go on an airplane!”
I hadn’t been to a foreign country before.
I hadn’t been on a holiday without my family before
But most importantly, I haven’t been on an Airplane before.
So I went.
A group of kids from my local area were joined by a bunch of adult carers and volunteers along with our own dedicated priest and we got on the plane to France.
Lourdes, in the 90s at least, was like Disney Land for Catholics. It was the tackiest place I’d ever seen. The streets were filled with shops selling Kitsch religious merchandise and all the cafes and restaurants were Biblically themed.
Unlike Gheel, we didn’t stay with host families but our group stayed in a Hotel, called the Madonna. I thought it was named after the pop singer, so I took a picture for my sister who was a big fan.
The year I was there, the Pilgrimage Trust was celebrating 40 years of sending kids to Lourdes, so Songs Of Praise, a BBC TV show was there to cover the action.
The main event was a huge mass of around 5000 pilgrims, the culmination of which was the singing of the song ‘Rise and Shine’, the unofficial anthem of the trust…the BBC were filming it.
And if you pause the episode of Songs of Praise… here… you can see me, making my TV debut. Signing and clapping along at… mass.
The BBC interviewed lots of people visiting Lourdes that week, one of them was this guy…
“… so many people here and its great.”
Yeah. In a way it was great. Mostly it was good to spend a so much time with other kids like me. I didn’t come home cured though or even a believer…
Getting back to Gheel in the 1200’s.
The people of Gheel, who effectively fostered people with disabilities, showed that care for disabled people was going in a more compassionate direction.
Their main motivation, as believers in the Catholic faith was salvation;
“if we take care of these people and treat them as family members, we will be rewarded in the hereafter.”
Over the next couple of centuries in Europe new technologies and methods were being developed that benefitted people with disabilities.
In the 1300s Spectacles were invented in Italy.
In the 1400s Gotz von Ber-lichin-gen, a German knight, lost an arm in battle.
So he created for himself what’s thought to be the first prosthetic hand. It was made of iron with moveable joints.
Also in the 1400s, The Venetian Republic founded the first publicly-funded health service in Europe. It required licensed doctors to attend an annual course in anatomy, attend monthly meetings and exchange notes on new cases and treatments.
But just as it was starting to look up for people with disabilities, at least in some parts of the world.
In the 1500s, comes the Protestant Reformation and the big man behind it — Martin Luther.
Things were about to get bad.
In the next episode of Disability, a parallel history.
Two steps forward. One step back…
